December gifted the paroxysmal nocturnal hemoglobinuria (PNH) community a big win. Fabhalta (iptacopam), developed by Novartis, became the first oral therapy approved by the U.S. Food and Drug Administration (FDA) to treat PNH. The news prompted a surge of feelings in me, given my years of…
The new year is upon us, which means more opportunities to accomplish bigger goals in life. Making it to another year with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) reminds me of my resilience and drive to conquer what others would deem impossible. Because you’re reading this, you’ve…
The holidays are filled with joy, happiness, love, togetherness, and so many warm, fuzzy feelings. But I wasn’t feeling any of them at the beginning of my health journey and had a hard time getting into the holiday spirit. I didn’t feel happy, joyful, or full of life. Instead, I…
Before I departed on a recent flight to New York City, I found myself watching a woman in a wheelchair as she was moved to the front of the line to board first. “Man,” I thought, “I’d love to be the first to do that and get to my seat.”…
In the thick of my aplastic anemia and paroxysmal nocturnal hemoglobinuria, my family and I boarded a plane to take a vacation. I hadn’t been on a flight in a while, other than to see my specialist in New York. We’d planned this trip to give me some…
Your story is your superpower! I’ve heard this statement so many times, but didn’t fully understand it until I began sharing my own story. Since 2008, I’ve battled two blood disorders: aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). In the beginning, I was focused only on my health so…
After I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I was told to consider a bone marrow transplant. My doctor quickly pointed out, however, that there weren’t many minority donors available. According to the National Marrow Donor Program’s Be The Match registry, you’re…
I’ve been thinking a lot lately about what I’ve learned about my mental health while on this journey with paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia. I was prompted to ponder this topic after reading several articles about World Mental Health Day on Oct. 10, which seeks…
Last week, I sat on my couch, curled up with a blanket, and turned on the movie “Sitting in Bars With Cake.” I watched the trailer before hitting “play,” understanding that an important piece of the story involved a young woman who received a life-altering medical diagnosis. To…
“What is it like to be diagnosed with life-threatening blood disorders as a young adult?” When someone asks me this question, my body language answers as I sigh deeply, tense my shoulders, pop my fingers, and fidget anxiously. It’s a loaded question with many answers. Being a young adult…
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